Wow! We finally got a formula change for Janna and the result has been surprising, even better than expected. Not only has Janna not had any major reflux problems on this Formula; Nestle Compleat, she had the best night sleep that anyone can remember her having - ever! Previously we were lucky to get a straight 6 hours, this would be considered a "good night's sleep". Last night she slept for 9 and a half hours! I'm so happy about that I could track down the creator of that particular formula recipe and give him/her a big Thank You hug. Of course I still do not like the idea of only giving Janna the same formula for every meal day in and day out so we're going to try a home made blenderized diet in the mornings and see how it goes. One thing is for sure, we've moved on from Pediasure and will not be looking back.
Of course sleep is still a bit of a premium luxury with Baby Alexa thrown in the mix. She's still nursing frequently every 2-3 hours and growing like a little weed. At around 9 weeks old she's now out of the 3 month old clothing and into 3-6 or 6 month sizes. She's moved up a diaper size too, I'm a bit concerned that she'll be out of the small size G-diapers before we can use up the refills. (Which I had ordered back in December from a third party online vendor who will remain nameless, but still have not yet arrived.) We've been using disposables in the meantime and Alex is now in size two. When I opened the new package And put the first #2 diaper on her I noticed the Elmo on the waist band and felt a wave of disappointment..maybe even a little bit of depression and it took me a few seconds to realize why. These diapers were the very same that had been used on Janna when we were inpatient at BCCH in December of 2008. She was 5 months old and we were in the midst of our battle with the seizure monster that was slowly stealing her from us. It was surprising to me that the presence of one little illustrated Sesame St character could evoke such an emotional response. I guess I am a little PTSD after all.
A final thought, I've heard many instances where having a special needs child stresses a marriage to the breaking point. When I'd hear these stories I'd thank my lucky stars for the man I'd married thinking that could never happen to us. More recent events have brought me to realize that even the strongest relationships can be tested and that, no my marriage was not immune. Not that I'm under the illusion that we weren't susceptible to other challenges, but Janna was a huge game changer for us.
My husband and I used to thrive on adventure, getting out into the mountains and exploring new territory. Janna came as a surprise to both of us, we hadn't planned on a child together. After her birth and what followed, I saw the road ahead as one of the biggest mountains I'd ever climb, not sure if I'd be rewarded with a view or pummelled by storms. I've trod up this trail the past two a half years with my head down, determined to reach the top. I knew my husband was falling behind but thought he'd catch up eventually. It wasn't until I looked up one day and saw him climbing back down that I'd realized he was lost, and retreating to more hospitable terrain. Do I follow him back down? Memories of the warm sun, carefee days in the flower dappled meadows, traveling the majestic forests and drinking from cool clean streams fill my head with a sad yearning for what once was. Then I look at my daughter; my beautiful Janna, and know I'm right where she needs me to be. So with a heavy heart I take one last look downward. I say my goodbye and up I climb shouldering the harsh weather through that moonscape with her because she deserves above all else to get to the top of that mountain.
Goodbye Tim, I'm sorry for not being the wife you wanted me to be, sorry you couldn't be the husband I needed but I'll never be sorry for our daughter.
Monday, February 21, 2011
Monday, January 24, 2011
Janna's new toys and Alexa is getting bigger.
The new year has come and we've been busy with the new babe and Janna. Janna has some new light toys that she really likes:
And Alexa is discovering all of Janna's old baby toys:
Janna now has had her Peg Perego stroller adapted with a specialized headrest, foam lat support and proper harnesses to help make it more appropriate for her. We were so delighted to have this done as it makes that seating not only more appropriate but also SAFE to seat her in. She can't arch out when properly clipped in and she doesn't arch as much because the headrest supports her head yet still allows her some movement to each side. Janna has also had her Pony walker/stander adapted to help keep her in it without arching backwards. It does do the trick but the jury is still out on whether Janna will adapt to the adaptation. The only downfall in the way the back and head support in the Pony has been built is that it still will not allow her to bring her body up straight - it keeps her a bit leaning forward (prone) while standing so it's still not an optimal position. She's didn't mind it at first but now she's starting to show us she's not totally thrilled - perhaps we'll figure that one out yet - it may need some additional adjustment.
The best news ever is that Janna's long awaited "Cuddle Bug" adaptive stroller will be shipped to us on the 28th of this month. We really missed it after we had to return the loaner. My Insurer has said they will cover it under Janna's "lifetime maximum" for mobility equipment which leaves me with mixed feelings as this obviously isn't the last time we'll need to purchase mobility equipment for her. Truth be told I'd rather they have only covered the $2K for a regular wheelchair (not motorized) and let us go to my husband's health spending account to claim the remainder - that would have left us with more flexibility in leftover funding should we need to access insurance funds for more equipment in future. I guess maximizing our funding options isn't in the insurer's interest. :) (duh!)
Oh well - my motto lately is lets worry about today and let tomorrow's challenges be dealt with when the time comes.
Janna now has had her Peg Perego stroller adapted with a specialized headrest, foam lat support and proper harnesses to help make it more appropriate for her. We were so delighted to have this done as it makes that seating not only more appropriate but also SAFE to seat her in. She can't arch out when properly clipped in and she doesn't arch as much because the headrest supports her head yet still allows her some movement to each side. Janna has also had her Pony walker/stander adapted to help keep her in it without arching backwards. It does do the trick but the jury is still out on whether Janna will adapt to the adaptation. The only downfall in the way the back and head support in the Pony has been built is that it still will not allow her to bring her body up straight - it keeps her a bit leaning forward (prone) while standing so it's still not an optimal position. She's didn't mind it at first but now she's starting to show us she's not totally thrilled - perhaps we'll figure that one out yet - it may need some additional adjustment.
The best news ever is that Janna's long awaited "Cuddle Bug" adaptive stroller will be shipped to us on the 28th of this month. We really missed it after we had to return the loaner. My Insurer has said they will cover it under Janna's "lifetime maximum" for mobility equipment which leaves me with mixed feelings as this obviously isn't the last time we'll need to purchase mobility equipment for her. Truth be told I'd rather they have only covered the $2K for a regular wheelchair (not motorized) and let us go to my husband's health spending account to claim the remainder - that would have left us with more flexibility in leftover funding should we need to access insurance funds for more equipment in future. I guess maximizing our funding options isn't in the insurer's interest. :) (duh!)
Oh well - my motto lately is lets worry about today and let tomorrow's challenges be dealt with when the time comes.
Saturday, December 18, 2010
Janna's Sister is here.
She was born on December 8th at 7:17am. She weighed 7lbs 3oz and has been a vigorous healthy little monkey from the get-go.
Her manner of coming into the world was quite a different experience than what we'd had with Janna. While our biggest concern was of safety of delivery for baby and me - it was a bonus that we were able to have such a wonderful (I will not say easy because that wouldn't be correct.) natural labour and delivery.
What follows is Alexa's birth story because I felt I needed to write it out and share it but if you're squeamish about such things you may want to stop reading now. Okay you've been warned. :)
Contractions woke me at around 2:30 am. I stayed in bed trying to figure out if they were the real thing or just strong Braxons. By the Tim's 3am work alarm went off I was pretty sure they were the real thing and decided to get up and check for any other labour signs. Sure enough - I had some light pink streaking. Contractions were stronger once I'd gotten out of bed. I had Tim help me put on the TENs machine. I switched it on intending to lay back down and try and get some rest and thinking we were a long way off yet. I set Tim to work saying "nothing will likely happen until this evening".
I found myself restless and decided time would be better spent packing any last items into my hospital bag, emailing my Doula, posting for friends on Facebook "sitting on an exercise ball with the TENs machine on - and contracting. Hows that for a status update!" and leaving posts for friends on several other message boards of which I'm a part.
After that I went upstairs - still intending to rest - but still found myself restless, contractions were stronger now and I really needed to concentrate on breathing to get through them. Some were so strong they left my legs shaking uncontrollably. Started to feel some pressure and kept needing to move from the bed to the bathroom and on the second of one of these trips I felt a pop and gush. I remember saying "oh, I guess this is really happening." I sent a text message to Tim to let him know the situation and several strong contractions later I was able to gather myself up to call my Doula. After listening to me a little while she said "holy cow Jenn it sounds like things are really happening, I'm packing up my stuff and coming - if things get really crazy call me again."
My mother had woken by this time, Janna had been awake and complaining quietly. I let Mom know I was in Labour but it wasn't "too bad yet" and "don't worry until you start to hear me screaming." :S.
Things were indeed happening. 30 minutes later contractions were now so strong that I was vocalizing loudly between them - couldn't be helped it was all I could do to cope. The TENS machine was very helpful and when I'd forgotten to hit the toggle switch during a contraction I really knew it! By the time Cindy (Doula) arrived she found me still in the bathroom holding the counter and leaning into it. She took some time to coach me through a few "surges" - reminding me about breathing and helping me along. I remember her saying. "Um I think we need to get ready to go to the hospital and I don't think we're going to make it to Abbotsford." I of course was in complete denial but in my own defense contractions never became regular, I would have one then a longish break, then another coupled with another, then a break then another three together then a break... I still didn't think I was that close and based on my experience with Janna I couldn't be that close - not that quickly! I didn't feel that close. Of course to help back my position, at that point I had a break in contractions longer than one minute and I looked at Cindy and said, "whew I think I'm going to get a nice break here." She looked at me hesitantly and asked "did you want to try a warm shower?" "Um..sure" I said but "I've got the TENs on - I'll have to take it off - electro-shock hazard." At that she laughed and no sooner had she begun to relax than another contraction - a good intense one happened but it was short. "Okay I'm thinking we need to go to the hospital now" she said. I wasn't in the mood to argue any longer.
She went downstairs and started recruiting my mom to help her pack her jeep. While she was gone I started having another contraction, then another and another back to back and I felt the slightest push urge but it was gone quickly. After what seemed like awhile but was likely only minutes - Cindy returned and offered to help me dress but I really didn't care to get that complicated; it's funny how Labour is really good at making you lose all modesty and any sense of decorum. Instead I simply asked for my big fuzzy house robe and my slippers and we were off down the stairs - slowly. Before we made it out the front door I had another strong contraction and there it was again, a slight, fleeting pushing urge. Cindy helped me through it and then looked me in the eye. "Jenn" she said. "Tell me the truth, are you feeling pushy?" I looked at her and said "yes just a little" "Okay" she said, "I think we're going to need to go to Chilliwack"
This was really not part of what we'd wanted - we had chosen the Abbotsford Hospital and because of past experience and result with Janna; I really didn't want to go to Chilliwack again. "I think we might be okay - I don't think I'm that close." I maintained. "Okay" Cindy breathed "we'll see how things go but by the time we get close to the Hwy we need to make a decision either way."
She helped me get in the jeep, I found I couldn't lift my leg to step in and it was necessary for Cindy to help lift it for me. During which another strong contraction but I was in and we were on our way. I had another contraction with a small push urge just as we were a minute into the drive. "Jenn honey I think I heard a push?" I nodded, "yeah just a little one - it was quick and now it's gone." She was quiet a moment. "Jenn, we're going to Chilliwack" "um no..." I started and then there was another strong contraction and a push urge. "Okay!" I yelled through it, "Chilliwack... Chilliwack!"
The ride was quite uncomfortable and I know I'd had at least 4 more contractions on the way with another stronger, less controllable urge to push. We arrived at Emerg, Cindy parked in an Ambulance stall and tried as gently as possible to rush me across the Emerg driveway. "Come on hon, we have to get off the road." Another contraction for me as we made our way slowly across to the Emergency room doors. I remember a women leaving the hospital trying to make eye contact with me as asking if she could "help" me. I really couldn't respond to her at all, I was having contractions more and more quickly now. An emergency nurse appeared and asked "chair?" "Yes please" exclaimed Cindy, she returned quickly with the chair and they both helped me to lower my body onto the chair as contractions had made it almost impossible for me to manage sitting in the chair on my own.
"I guess I don't have to ask where you two want to go?" the nurse quipped with a smile. I had a quick smile myself in reply but it was fleeting as my body was really commanding all of my attention.
I was wheeled quickly though the hallways to the elevator. I found myself arching and lifting my body with my arms to keep the weight off my bottom in the chair and there it was another strong push urge - It was impossible not to give in a little. I felt a gush as I was wheeled right past a dumbfounded and then panicked Maternity ward desk. Cindy was barking out orders and snapped the nurses into action all while wheeling me into the first available delivery room.
A nurse and a resident met us there and the nurse said - "We'll need you up here" motioning to the gurney in the delivery room. Because of my general condition and the fact that the foot rests were still in place getting out of the chair was awkward if not impossible. I said "I'll need help" Cindy noticed my situation immediately said authoritatively; "can you move the footrest for her while I help her up." Once they had me up the next challenge was actually getting on the bed. Both the resident and the nurse were telling me I needed to "hop up into bed" again I had to say. "can't lift my leg, you'll have to lift it for me."
Once I was up in position I had another contraction and one of the hospital staff asked if I wanted to try the nitrous oxide "gas" I nodded yes and it was provided for me and I was instructed how to use it. After I'd had 2 puffs the nurse proceeded with an exam to chart the position of the baby.
Her exam prompted another strong contraction along with an extremely strong push urge - The nurse obviously noticed this and she looked at me "Dont push,..." I couldn't help a small push "DONT PUSH" barked both a paniced nurse and resident in unison. At this point Cindy leaned over and whispered into my ear. "It's okay Jenn, you're ready - do what your body is telling you to do." I felt a wave of relief as the urge to push was now overwhelming and I proceeded despite the loud protests of the hospital staff.
In less than 2 good pushes I felt Alexa's head emerge then another push and her shoulders came free and all 7lbs 3oz of our screaming baby daughter was in the hands of the nurse who had been conducting the exam. Looking back I have to laugh - I guess the baby's position on the chart should have read "nurse Barbra's hands".
Alexa was put on my tummy and a warm towel was draped over her and I looked at her in disbelief. I was shocked with the realization that I was very close to having had her in Cindy's jeep. In about 15 minutes more I was being assisted to breastfeed and Alexa was quite interested and latched like a little pro.
I felt a number of things, shock, relief, happiness and euphoria that everything had gone so well and this little person I'd managed to deliver into the world looked so health and vigorous. The experience was not only positive - after my experience with Janna in Labour and Delivery; Alexa's birth granted me peace, healing of old wounds that I hadn't been aware still lingered.
I'm more grateful for what Alexa's birth gave back to me than I can put to words.
Her manner of coming into the world was quite a different experience than what we'd had with Janna. While our biggest concern was of safety of delivery for baby and me - it was a bonus that we were able to have such a wonderful (I will not say easy because that wouldn't be correct.) natural labour and delivery.
What follows is Alexa's birth story because I felt I needed to write it out and share it but if you're squeamish about such things you may want to stop reading now. Okay you've been warned. :)
Contractions woke me at around 2:30 am. I stayed in bed trying to figure out if they were the real thing or just strong Braxons. By the Tim's 3am work alarm went off I was pretty sure they were the real thing and decided to get up and check for any other labour signs. Sure enough - I had some light pink streaking. Contractions were stronger once I'd gotten out of bed. I had Tim help me put on the TENs machine. I switched it on intending to lay back down and try and get some rest and thinking we were a long way off yet. I set Tim to work saying "nothing will likely happen until this evening".
I found myself restless and decided time would be better spent packing any last items into my hospital bag, emailing my Doula, posting for friends on Facebook "sitting on an exercise ball with the TENs machine on - and contracting. Hows that for a status update!" and leaving posts for friends on several other message boards of which I'm a part.
After that I went upstairs - still intending to rest - but still found myself restless, contractions were stronger now and I really needed to concentrate on breathing to get through them. Some were so strong they left my legs shaking uncontrollably. Started to feel some pressure and kept needing to move from the bed to the bathroom and on the second of one of these trips I felt a pop and gush. I remember saying "oh, I guess this is really happening." I sent a text message to Tim to let him know the situation and several strong contractions later I was able to gather myself up to call my Doula. After listening to me a little while she said "holy cow Jenn it sounds like things are really happening, I'm packing up my stuff and coming - if things get really crazy call me again."
My mother had woken by this time, Janna had been awake and complaining quietly. I let Mom know I was in Labour but it wasn't "too bad yet" and "don't worry until you start to hear me screaming." :S.
Things were indeed happening. 30 minutes later contractions were now so strong that I was vocalizing loudly between them - couldn't be helped it was all I could do to cope. The TENS machine was very helpful and when I'd forgotten to hit the toggle switch during a contraction I really knew it! By the time Cindy (Doula) arrived she found me still in the bathroom holding the counter and leaning into it. She took some time to coach me through a few "surges" - reminding me about breathing and helping me along. I remember her saying. "Um I think we need to get ready to go to the hospital and I don't think we're going to make it to Abbotsford." I of course was in complete denial but in my own defense contractions never became regular, I would have one then a longish break, then another coupled with another, then a break then another three together then a break... I still didn't think I was that close and based on my experience with Janna I couldn't be that close - not that quickly! I didn't feel that close. Of course to help back my position, at that point I had a break in contractions longer than one minute and I looked at Cindy and said, "whew I think I'm going to get a nice break here." She looked at me hesitantly and asked "did you want to try a warm shower?" "Um..sure" I said but "I've got the TENs on - I'll have to take it off - electro-shock hazard." At that she laughed and no sooner had she begun to relax than another contraction - a good intense one happened but it was short. "Okay I'm thinking we need to go to the hospital now" she said. I wasn't in the mood to argue any longer.
She went downstairs and started recruiting my mom to help her pack her jeep. While she was gone I started having another contraction, then another and another back to back and I felt the slightest push urge but it was gone quickly. After what seemed like awhile but was likely only minutes - Cindy returned and offered to help me dress but I really didn't care to get that complicated; it's funny how Labour is really good at making you lose all modesty and any sense of decorum. Instead I simply asked for my big fuzzy house robe and my slippers and we were off down the stairs - slowly. Before we made it out the front door I had another strong contraction and there it was again, a slight, fleeting pushing urge. Cindy helped me through it and then looked me in the eye. "Jenn" she said. "Tell me the truth, are you feeling pushy?" I looked at her and said "yes just a little" "Okay" she said, "I think we're going to need to go to Chilliwack"
This was really not part of what we'd wanted - we had chosen the Abbotsford Hospital and because of past experience and result with Janna; I really didn't want to go to Chilliwack again. "I think we might be okay - I don't think I'm that close." I maintained. "Okay" Cindy breathed "we'll see how things go but by the time we get close to the Hwy we need to make a decision either way."
She helped me get in the jeep, I found I couldn't lift my leg to step in and it was necessary for Cindy to help lift it for me. During which another strong contraction but I was in and we were on our way. I had another contraction with a small push urge just as we were a minute into the drive. "Jenn honey I think I heard a push?" I nodded, "yeah just a little one - it was quick and now it's gone." She was quiet a moment. "Jenn, we're going to Chilliwack" "um no..." I started and then there was another strong contraction and a push urge. "Okay!" I yelled through it, "Chilliwack... Chilliwack!"
The ride was quite uncomfortable and I know I'd had at least 4 more contractions on the way with another stronger, less controllable urge to push. We arrived at Emerg, Cindy parked in an Ambulance stall and tried as gently as possible to rush me across the Emerg driveway. "Come on hon, we have to get off the road." Another contraction for me as we made our way slowly across to the Emergency room doors. I remember a women leaving the hospital trying to make eye contact with me as asking if she could "help" me. I really couldn't respond to her at all, I was having contractions more and more quickly now. An emergency nurse appeared and asked "chair?" "Yes please" exclaimed Cindy, she returned quickly with the chair and they both helped me to lower my body onto the chair as contractions had made it almost impossible for me to manage sitting in the chair on my own.
"I guess I don't have to ask where you two want to go?" the nurse quipped with a smile. I had a quick smile myself in reply but it was fleeting as my body was really commanding all of my attention.
I was wheeled quickly though the hallways to the elevator. I found myself arching and lifting my body with my arms to keep the weight off my bottom in the chair and there it was another strong push urge - It was impossible not to give in a little. I felt a gush as I was wheeled right past a dumbfounded and then panicked Maternity ward desk. Cindy was barking out orders and snapped the nurses into action all while wheeling me into the first available delivery room.
A nurse and a resident met us there and the nurse said - "We'll need you up here" motioning to the gurney in the delivery room. Because of my general condition and the fact that the foot rests were still in place getting out of the chair was awkward if not impossible. I said "I'll need help" Cindy noticed my situation immediately said authoritatively; "can you move the footrest for her while I help her up." Once they had me up the next challenge was actually getting on the bed. Both the resident and the nurse were telling me I needed to "hop up into bed" again I had to say. "can't lift my leg, you'll have to lift it for me."
Once I was up in position I had another contraction and one of the hospital staff asked if I wanted to try the nitrous oxide "gas" I nodded yes and it was provided for me and I was instructed how to use it. After I'd had 2 puffs the nurse proceeded with an exam to chart the position of the baby.
Her exam prompted another strong contraction along with an extremely strong push urge - The nurse obviously noticed this and she looked at me "Dont push,..." I couldn't help a small push "DONT PUSH" barked both a paniced nurse and resident in unison. At this point Cindy leaned over and whispered into my ear. "It's okay Jenn, you're ready - do what your body is telling you to do." I felt a wave of relief as the urge to push was now overwhelming and I proceeded despite the loud protests of the hospital staff.
In less than 2 good pushes I felt Alexa's head emerge then another push and her shoulders came free and all 7lbs 3oz of our screaming baby daughter was in the hands of the nurse who had been conducting the exam. Looking back I have to laugh - I guess the baby's position on the chart should have read "nurse Barbra's hands".
Alexa was put on my tummy and a warm towel was draped over her and I looked at her in disbelief. I was shocked with the realization that I was very close to having had her in Cindy's jeep. In about 15 minutes more I was being assisted to breastfeed and Alexa was quite interested and latched like a little pro.
I felt a number of things, shock, relief, happiness and euphoria that everything had gone so well and this little person I'd managed to deliver into the world looked so health and vigorous. The experience was not only positive - after my experience with Janna in Labour and Delivery; Alexa's birth granted me peace, healing of old wounds that I hadn't been aware still lingered.
I'm more grateful for what Alexa's birth gave back to me than I can put to words.
Sunday, October 31, 2010
October 31st, 2010. Just a note regarding an awesome Janna toy.
Why wait for Christmas! Janna's taught me that it's just better not to wait for things.
We found this toy at Costco and I loved it the moment I saw it. Perfect for her and she really seems to like it. It made my day to see her actually PLAY with something!
We found this toy at Costco and I loved it the moment I saw it. Perfect for her and she really seems to like it. It made my day to see her actually PLAY with something!
Thursday, August 5, 2010
August 15th, 2010. AKA: Janna's Two and will be getting a baby sister for Christmas!
That's right, it's been ages again since I've posted but life and time has had a way of slipping by quickly.
Janna is stable and doing well from a health standpoint, no seizures that we can identify, she's gaining weight well, her eyesight has improved, she's moving a little more than she used to but she's still very delayed. No sitting up, rolling over, she's still floppy in her neck and trunk.
She is also learning to cry - yep no smiles but a discern-able cry is taking shape, with tears even! I feel a bit bad about being happy about that, what normal parent in the world is happy about hearing their child cry? Well we're not "normal" parents and we take joy in the strangest things around here. We're still learning to make our peace with that and move on.
Still no laughing yet - but Janna HATES it when she hears laughter, something about the sound seems to be quite grating to her, she tenses up, arches and sometimes makes her crying sound to accompany the laughing she hears. I hope someday she'll be able to get past that, as she's gotten past jumping at every sharp or loud sound that happens around or near her.
So we're about to embark upon a second adventure, with a baby sister due in December. I'm excited and frightened at the same time, under the circumstances I know that's to be expected but it doesn't make it any easier to deal with.
Time for some Janna pictures, they always make me feel better.
Janna is stable and doing well from a health standpoint, no seizures that we can identify, she's gaining weight well, her eyesight has improved, she's moving a little more than she used to but she's still very delayed. No sitting up, rolling over, she's still floppy in her neck and trunk.
She is also learning to cry - yep no smiles but a discern-able cry is taking shape, with tears even! I feel a bit bad about being happy about that, what normal parent in the world is happy about hearing their child cry? Well we're not "normal" parents and we take joy in the strangest things around here. We're still learning to make our peace with that and move on.
Still no laughing yet - but Janna HATES it when she hears laughter, something about the sound seems to be quite grating to her, she tenses up, arches and sometimes makes her crying sound to accompany the laughing she hears. I hope someday she'll be able to get past that, as she's gotten past jumping at every sharp or loud sound that happens around or near her.
So we're about to embark upon a second adventure, with a baby sister due in December. I'm excited and frightened at the same time, under the circumstances I know that's to be expected but it doesn't make it any easier to deal with.
Time for some Janna pictures, they always make me feel better.
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